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BEGIN AGAIN is a series of A+ personal essays running in the first half of November 2023 where writers were asked to explore a transition, a move, grief, a breakup, repeating patterns or breaking patterns, cycles and rebirth, remaking yourself, or laying out plans for the future while standing in the ashes of something you thought was forever. And wow, how they responded. We hope you enjoy these vulnerable, sensitive, always deep but sometimes surprisingly funny works, and we’re grateful for your support that allows us to continue to publish new work from our community. These essays and paying queer and trans writers for their work are things that are made possible by A+ members like you. Queer media isn’t free to make, and we’re now and always grateful that you’re an A+ member.

-Nico

“Are you too sick or injured to work?”

It should be an easy question. “Yes or no?” But my health isn’t that binary.

I recently lost my main source of work and income via a round of lay-offs at the remote non-profit where I’d been working for almost four years. During that time I’d developed new chronic symptoms that had dramatically changed my life, making it impossible to do basic tasks like showering or cooking without either help, or a lot of time to recover after. Now, my state’s unemployment form was asking me to say whether I’m too sick to work, and giving me an existential crisis. First, I didn’t want to accidentally disqualify myself from unemployment benefits, but I also didn’t want to say that I’m well enough to work when I’m not sure about that either. A few days ago, I got an email from a chronic illness advocacy non-profit saying that 25% of people with one of my chronic illnesses are too sick to work. Could I be part of that?

The truth is that I had taken more sick leave at my job than most employers would be willing to tolerate. I had recently been out sick for two weeks and returned to work with a doctor’s note requesting reasonable accommodations to adjust my schedule to manage ongoing symptoms.

Maybe I am too sick to work. But I don’t think I know how to stop.

I am often mistaken for a highly detail-oriented Type A overachiever when in reality I’m a big-picture, artsy type who can’t focus on one thing for too long before a shiny new idea distracts me. I trained myself to appear that way. Before I knew I was queer or that I was born with a rare genetic condition that makes my joints dislocate and puts me at high risk for developing other rare conditions, I just knew that I was different from everyone in my hometown, and that I didn’t like it. I knew I wanted to get out and far away as soon as I possibly could. But my family didn’t have the money to send me to the sort of colleges that, according to y2k logic, would help me get the kind of job I needed to be able to escape. My mom worked in customer service and my dad always worked two jobs. I realized that if I wanted to be like the handful of people who got out of this small town, I would have to get a scholarship. If I wanted a scholarship I would need to maintain an impressive GPA, do all of the extracurriculars I could fit in my schedule, and take every AP class my school offered. Working backwards, it meant I’d have to start my plan to become a perfect, top-of-the-class-scholarship-earner when I was very young. The system was rigged to decide which students would “succeed” starting in elementary school. Fourth through sixth grade report cards determined whether teachers recommended students for honors classes in junior high. Junior high grades then determined if you stayed in honors in high school, which gave your GPA a bump and set you on a path towards taking AP classes for college credit. I carefully calculated a plan to be exactly what the teachers wanted me to be.

By the time I finished high school I still hadn’t come to terms with my queerness (because witnessing classmates getting bullied was enough to silence me), but my genetic condition had certainly reared its head and introduced me to ableism. I spent most of high school dislocating and spraining every joint in my body to the point that the gym teachers accused me of faking injuries to get out of class. I dislocated my knee, tore many ligaments, and chipped my kneecap in the winter of my senior year and spent the next six months in a wheelchair getting tormented and bullied by both students and staff, who again accused me of faking. A classmate’s mother asked me if my doctor knew I was using a wheelchair and suggested I would do better to simply “walk it off.” Another classmate’s mother told me her son had knee surgery and was fine afterwards, as if there is only one type of knee injury and surgery. The same gym teacher who had accused me of faking in the past now tried to get me expelled for what she claimed was failing to thank bus drivers for helping me get in and out of buses. (This doesn’t seem like a reason to expel a student even if it had been true, but importantly, my dad was the school bus driver and she never thanked him for anything.) I missed out on a lot of senior class activities because they weren’t accessible. I became further isolated from friends who didn’t seem to know how to talk to me now that I was in a wheelchair. When it came time for graduation and awards ceremonies, I reveled in the validation that I was better than all of the people who had harassed me and tried to kick me out of school.

“Oh you want to kick me out of the school? That’s right I am in the National Honor Society and I did win that prestigious scholarship fund. Have you seen the book my poem was just published in?”

“Oh You think I’m faking it? Please see my name on the plaque in the lobby, it says I’m the most open-minded student in the graduating class (yes that was a real scholarship award I got from an anti-bullying campaign). Perhaps you could take a lesson from me on discrimination and bullying?”

“Oh, your son was fine after his knee surgery? Was your son ranked fifth in his class of hundreds of students?”

At the choir’s senior concert, I proudly chose Kelly Clarkson’s “Breakaway” as my senior solo. I stared directly into the audience, trying to see their reactions as I defiantly sang “trying hard to reach out but when I tried to speak out felt like no one could hear me wanted to belong here but something felt so wrong here so, I prayed I could break away.”

And this learned perfectionism wasn’t limited to academics. I got my first under-the-table job at a Yogi Bear themed campground where I dressed up as Yogi and Cindy bears when I was about thirteen years old. I worked entry level jobs during college and ran a blog on the side. I got my first “adult” job at an activist non-profit by approaching the application process with the mantra “be so good they can’t ignore you” and creating what my future-boss called the longest application sample project he had ever seen.

Then I proceeded be the best activist that I could be, to give everything I had to the cause. I couldn’t afford an apartment in expensive Washington, DC but I wanted to be the first person to arrive and the last person to leave the office. I got up before the sun to travel an hour and a half by bus and metro. I came back after dark, microwaved a frozen meal, watched one episode of a show on my laptop, and went to bed. I regularly skipped lunch so that I could keep working and I unintentionally lost weight in the first month of the job. I answered emails on the weekends and monitored social media posts like I was responding to a crisis that didn’t actually exist. I had no time for friends, hobbies, or anything fun because I was always commuting, at work, or still working on my days off. My big project was a huge climate march in New York City that was promised to be historic in nature and I had taken on that promise as if it was my personal duty to deliver. When the march finally arrived, my jaw hurt so badly I could barely open my mouth and had to rely on soups and smoothies to eat. I developed a pain in my chest that had me convinced that I was having a heart attack and I had to go to an urgent care. It turned out to be a condition called costochondritis where the cartilage in your rib cage becomes inflamed. It hurt to breathe or move my arms but, at least, the march was historic. I got to frame the front pages of The New York Times and USA Today and hang them above my desk to show everyone how perfect it had been.

I have never stopped working, achieving, and perfecting. And I burnt myself into the ground. More chronic illnesses have materialized alongside the stress and burnout. The more chronic illnesses I developed and the more disabled I became, the more impossible it became to appear perfect.

This world is not built for bodies like mine and I have spent hundreds of hours I will never get back arguing, calling, emailing, faxing (yes, faxing) and filling out forms to request the most basic access needs: a ramp or elevator so I can enter a building, a parking spot with room for my mobility scooter, an accommodation letter for work, a chair a at a standing room only concert, a hotel room with space for my mobility scooter, a bathroom with handlebars so I don’t fall. I know because I have spent tens of thousands of dollars on medical care only to see doctors who don’t know how to or don’t want to help me. I know because it feels like I’m the only one still wearing a mask trying to protect myself from a virus that might kill me. I know because I have done the emotional labor to try to educate people who call themselves progressive activists on the basics of ableism. And I have done all of this with a lot less energy and more pain than most people my age.

I could never actually be perfect. No one can, but for decades perfectionism served as both a tool to eventually separate myself from and a shield to protect me from ableism and homophobia. I might have a body that literally can’t keep itself together, but maybe I could try to be the most accomplished person in the room. I might not be capable of walking sometimes, but have you noticed how smart, well-spoken and put-together I am? I’m such a good disabled person, the heroic kind.

It wasn’t all bad. Perfectionism got me where I am. It took me thousands of miles away from my hometown bullies to live in a place that I love. It helped me meet my partner, come out, fall in love, and get married. It gave me enough money to adopt and care for my dog who brings me a lot of joy and who I’m starting to train to be a service dog. It gave me a chance to access medical care and get diagnoses and treatments. It brought me to progressive spaces where I could learn about ableism, capitalism, cisheteronormativity, and how they were harming me. But now the strategy I had used to survive was making me sicker and preventing me from getting the rest and medical care I truly needed. Getting laid-off forced me to question this perfectionism head-on in the context of everything I had learned since leaving my hometown. It brought me to the edge of a cliff and gave me a choice. I could either turn back around, start my job search, and keep trying to force myself to be perfect. Or I could consider the terrifying but real possibility that I am too sick to keep up that lie and jump — without knowing where or how I would land.

My spouse and I decided to jump off the cliff. I’m not looking for a new full-time job and we’re downsizing to a smaller apartment in a cheaper area when our lease ends. Hopefully I’ll get approved for state unemployment but we don’t know. We just know that I need to do this either way. We joke that I’m going to be a stay-at-home dog mom, imagining an alternate reality where I live a Real Housewives lifestyle and that I’m choosing not to work out of privilege. It’s easier than acknowledging that this is truly a decision coming from desperation and ableism. I cannot keep sacrificing my body to capitalism, ableism, and the things these systems require of “productive” people. I cannot keep trying to be the perfect non-profit activist fighting for a vision of liberation that fails to genuinely include the disability community.

So what now?

My first week unemployed I wrote myself a checklist of all the things I wanted to accomplish that week: the doctors I would call, housework I would do, creative projects I would start on, the physical therapy routine I would complete. One by one, I checked off each item, but at the end of the week I didn’t feel proud or accomplished. I felt tired. In the face of free time, an empty schedule, and a lack of an answer to the question “so what do you do?,” I replaced one job with another. I created goals and tasks with artificial deadlines and managed myself into perfection. I was going to be the Perfect Disabled Person with a checklist to prove I wasn’t one of those “bad lazy disabled people” you hear about. I even briefly considered writing myself a work plan with SMART goals (I wish I was making that up, but sadly it’s true). While I do have a lot of medical needs to manage, I realized I was just trying to rebuild all the stressful systems I had had at work. But the systems of capitalism and burnout culture are not going to heal my body. If anything, they’ve contributed to the problem.

So I did what any millennial queer would do: I talked to my therapist. She gave me a meditation card from the The Nap Ministry’s Rest Deck by Tricia Hersey that said “I will imagine what my body needs. I will daydream for freedom.” I wrote each sentence on the top of a page in a journal and used it as a journaling prompt to try to work through what freedom and listening to what my body needs could mean. When I got to freedom, my brain promptly responded like it was a word association exercise in a way I didn’t expect. “Freedom is money,” it said. Over and over. Excuse me?! How is it possible that my queer, disabled, feminist, anti-capitalist, non-profit worker self could believe that freedom is money? This makes no fucking sense!

But deep down that voice made perfect sense. It made perfect sense because I was bullied, harassed, and physically assaulted where I grew up. My family didn’t have the financial resources to send me to another school. I had spent decades working towards a salary that would let me live in a more diverse place where I could find more people like myself. And to be honest, even though I love and trust my spouse and feel lucky to have someone who supports me taking the time I need to care for myself, the idea of intentionally leaving the workforce and relying on my partner as a one-income household is terrifying. I never wanted to feel stuck again. Money was the tool that let my fight or flight response know that this time I could take flight if I needed to. Even now, my list of creative projects I want to do in my free time, around all the medical appointments and treatments, includes some way to eventually make money. I could write a book and eventually maybe sell it. I could design new products for my queer Etsy store. I could start a Youtube channel or a blog about disability rights and monetize it. FUCK. I don’t know how to turn it off.

I decided that maybe I needed to reframe the word and think about what I wanted freedom from, instead of the word freedom on its own. Something decidedly different comes to mind here: pressure, expectations, productivity, schedules, rules, timelines, capitalism, what other people think is normal. But the second I felt like maybe I was starting to break away from the idea that freedom equals money I wrote down that perhaps financial freedom could be less about how much money I make and more about how often I work and where I make money. It sounded like a good idea, but then I immediately felt pressure to figure out other ways to make money without eventually going back to a full-time job and that felt overwhelming, not freeing. Again, I don’t know how to turn it off.

I tried to be very intentional about turning off the perfectionist, goal-oriented, financial freedom-focused mindset by buying things meant for children. When I was a kid, my grandmother kept a drawer at her house for me of random scraps of materials and objects she found. I loved going to the drawer when I visited to see what was inside and coming up with imaginative craft projects by combining random things like paper lunch bags, straws, scraps of leftover fabric, twist ties, and paint. I would make little gifts for my family like miniature Easter baskets I made entirely out of paper. And though I’m sure they would have humored me if I tried, I never asked anyone to pay me for it. I did it because it brought me joy. So I bought several craft kits from Five Below with plans to create and decorate something that had nothing to do with being perfect, making money, meeting a goal or deadline. I wanted to remind myself what it was like to just simply be in the moment, creating for the sheer pleasure of it.

Before these items arrived I got very sick. I mean, I’m already very sick but I got an acute respiratory infection with an intense cough and overwhelming exhaustion. It forced me to stop working on medical goals like scheduling appointments and doing physical therapy. Ironically, it forced me to stop trying to figure out how to stop working and to just actually stop working. Since I don’t have a job it was the first time in years that I allowed myself to truly rest because I didn’t need to debate whether or not I had enough sick days to manage my chronic illness and this acute infection. I didn’t have to wonder how I would get by if I used up all of my sick days now and got an autoimmune flare up from this infection. (Can employers please stop with the limited sick days? It is unfair to people with chronic illness and caretakers.) I could sleep twelve hours straight and then fall asleep again on the couch while watching a movie. I could simply listen to my body.

I am still recovering from this infection and the complications that come with getting sick when you are chronically ill, but I am starting to feel a little more like myself each day. I can’t rush back into my checklists because I developed an asthmatic cough that makes breathing difficult whenever I try to do anything besides sit quietly still. My body forced me to experience what it actually looks like to rest without the need for productivity or perfectionism. I know the hard part is going to be remembering this when I recover. I could easily try to “make up for lost time” and steamroll my way through my checklists.

Instead, I’m going to try to keep giving myself time to rest as well as time for joy – like finally doing the craft kits I ordered before I got sick. I want to set limits on how much I try to “achieve” in one day or how many hours I spend being “productive” so that I don’t get carried away. I want to buy the entire deck of Tricia Hersey’s Nap Ministry cards, frame them, and hang them around my new down-sized apartment. I want to try not to get too wrapped up in having the perfect move where everything is packed in a precise manner and unpacked by a certain deadline. I want to try to remember that lying in bed all day napping, reading, or watching a movie is perfectly acceptable. I need to remind myself that even resting can’t be perfect and it doesn’t have to look a certain way. Decades of learning the ableist, capitalist, white-supremacist ways to be the perfect, productive, high-achiever aren’t going to be undone by a few weeks of having a bad acute infection, but it’s a start.

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